A Wiped-out Warrior Battles Unrelenting Fatigue

Kate Spencer avatar

by Kate Spencer |

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Brain fog

The unrelenting fatigue hit me like a bad case of the flu. I longed to stay in bed all day, but I had a full schedule that wouldn’t allow for that. I pushed myself and continued to do so each day, until one day, I found I simply couldn’t push myself any longer. The fatigue had won.

At my worst, I was sleeping 18 to 20 hours per day, not necessarily all at once. Some mornings, after what felt like a good night’s sleep, I could start my day as I did before I had sarcoidosis. However, the fatigue would seep back in by lunchtime. I couldn’t help but fall into a deep slumber later in the day.

Friends and family tried to empathize with my lethargy. After all, we’re all tired these days, aren’t we? But I knew the fatigue they were referring to; it was the kind that would likely be relieved by a nap or a good night’s rest. I had experienced that type of tiredness, too, before sarcoidosis.

This fatigue, however, was an extreme sleepiness that no amount of rest relieved, and it had a negative effect on all of my activities. For instance, it caused me to pull my car off to the side of the road, curl up in the back seat, and sleep in the middle of the day. This would happen while I was en route to an appointment or in the middle of a workday, when I was still trying to get things done.

This same exhaustion caused me to nod off in the waiting room of a doctor’s office or to curl up on my sofa in the middle of the day. My husband came home from work late one afternoon and found me asleep on our sofa, in a comatose-like state. “This isn’t normal. You’re only 30 years old,” he said. And he wasn’t wrong.

I was experiencing an unrelenting washed-out feeling, my body unsatisfied by any amount of shut-eye. Yet, none of the tests showed anything wrong such as a sleep abnormality, depression, or even cancer. I couldn’t shake it off and just go on with my life. This exhaustion had taken over.

Luckily, that phase of fatigue didn’t last forever, but I still need more sleep than the “average” person my age. In addition, I often feel that flu-like state setting in when I start to get run down — like I just want to tuck myself into bed and sleep for a week. When this fatigue creeps in, it’s not without warrant. In fact, it serves as a gentle reminder to take it easy, rest more, and take care of myself.

In some ways, it’s helpful to know my fatigue is typical for someone with sarcoidosis. However, I have to admit, some days I’m simply tired of being tired.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

Raymond Brooks avatar

Raymond Brooks

Well done. A succinct account of being totally knackered. As you alluded to, people no matter how well intentioned do not understand when you tell them about the lethargy. I was lucky I crashed and burned on the last day of work before I retired. I have since developed acute pulmonary Sarcoidosis

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Ruth Berkowitz avatar

Ruth Berkowitz

Hello: My name is Ruthie B.
OH OH YES I feel your pain..
I just was dx with Pneumoina in left lung which was so hard to breath without pain and lots of coughing. I was Dx with Sarcoidosis in 2013. I cant tell you how Wiped out I feel. My last baby wt was 10lbs and 2 oz and 22 1/2 inches long what hard birth. We made it thru that and he is grown now just out of college. BUT when I have a flare up with Sarcoidosis I feel like I just delived my son again, Now with Pneumonia and I so so wiped out. I cant even do laundry. The Primary doctor cleared me today as my lungs sound clear and no sign of Sarcoidosis but I have been sick for 2 months. I cant believe how tried and weak I am. Does anyone have any idea how long before the weakness goes away?
I know I had infection in left lung and Dr. said, it will take 4 to 6 weeks to recover from Pneumonia but with back ground of Sarcoidosis Come on I need some energy.. I know it will pass as is does but I do understand the weakness.. Just hang in there I am positive person and feel We can beat it..

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